LIFE WITH TD

Before TD, I led a very active life. I worked out five to six days a week, worked a full-time job, and enjoyed going out with friends a couple of times a week. However, as my TD symptoms progressed, that all stopped.

Personal relationships were the first casualty of TD for me. As the movements became more pronounced, I became increasingly paranoid, constantly wondering if people were staring at me. Well, now I know they were staring because, unbeknownst to me, my arms and legs were flailing about. It was impossible not to notice that I could not keep myself still.

I stopped going out with friends and eventually stopped seeing people socially almost entirely. The final straw occurred when one day, on my way to work I was reading the newspaper on the bus when another passenger pointed at me and said at the top of her lungs something to the effect of “he’s nasty, what is he doing with his hands.” I was mortified. Turns out I had been rubbing my thigh beneath the newspaper. As a result of this paranoia and humiliation, I isolated myself outside work. The gym was the next casualty for me. I am one of those freaks who actually enjoys working out so this was a major deal for me. One of the TD symptoms I experience is my right hand will spontaneously open and release whatever I’m carrying. Consequently, weightlifting became dangerous as both my doctor and I worried about the very real possibility that I would drop a weight on my head or chest if my hand released.

This fear became all too real one day at work.

Another time I was holding a glass when my hand released. The glass hit the bar and shattered, lacerating my hand in five places. I was, however, still able to work. It wasn’t until my hands began to shake so violently that could not feed myself with a knife and fork that I had to stop working and go on disability.

It has taken a while for me to get my life back. I have been managing TD for almost five years now and my symptoms have decreased dramatically. My hands no longer shake so I am able to work again. I can now feed myself with utensils (it’s the little things in life right 😊), and I am able to work out again. I’m even starting to reconnect with old friends.

Looking back, I began to experience the uncontrollable movements I would come to know as tardive dyskinesia in 2001.

Being unaware of the movements myself, I would wonder why they were asking. It took my mother confronting me, as only a mother can, for me to become consciously aware I was making the movements. The movements had progressed so slowly I wasn’t even aware they were occurring.

My mother was first to voice her concern to me about the uncontrollable movements. What my mother noticed that I failed to see, were hands that shook so fiercely I could not feed myself with a fork or spoon because the food would fall off. I could not wear button down shirts as my fingers couldn’t guide the button through the hole.

She insisted upon accompanying me to my next psychiatrist appointment and I am so glad she did. What was supposed to be a fifteen-minute, follow-up visit took over two and a half hours as my mother grilled the psychiatrist about what was happening to me. I had been seeing the same psychiatrist for fifteen years and she had never acknowledged or asked me about my movements. By the time I received my diagnosis, the movements were so severe that I had strangers asking me if I was taking illegal drugs.

Still, my psychiatrist said nothing about what could have caused the movements. Instead, she referred me to a neurologist.

Lucky for me, that neurologist happened to be participating in a clinical trial for a drug to treat tardive dyskinesia.

Learning that what I had been experiencing all those years had a name reassured me. It made me less afraid. I’m so grateful my mom was there to help me speak up about the movements.